Interacting with family and friends who don’t understand what it’s like to live with lupus is one of the most challenging experiences when coping with the disease.
They might insist that fatigue is simply being tired and blame your time in bed as your own laziness, or your lack of not trying hard enough to get up. They might take it personally and become angry that you have had to repeatedly cancel plans due to fatigue or a flare. This might cause them to become angry or eventually cut ties with you.
When loved ones don’t understand lupus, especially major, common symptoms like fatigue and pain, interacting with them can be difficult. Finding ways to help them understand pain and fatigue could help your relationship with them.
Be Specific About Pain Symptoms
Pain can mean different things. When describing your pain, be specific about the type of pain you’re experiencing. For example, is it a sharp pain? A stabbing pain? A dull ache? A burning sensation? Every time someone touches you, does it feel like they’re pressing into a bruise even when there is no actual bruise?
In addition, explain where the pain is located. Is it all over your body (widespread pain)? A sharp stomach pain? Joint pain? Back pain? Knee pain?
Explain how it impacts you. Do you have trouble getting out of bed in the morning due to joint pain and muscle stiffness? Does it hurt to write with a pen? Is there a stabbing pain in your knees when you walk?
Here are a few examples of how to explain pain:
“It’s hard for me to walk. I have a sharp, stabbing pain on both sides of my hips.”
“The stiffness in my muscles and joints causes me pain when I move. When I try to get out of bed in the morning and stretch and unfold my limbs, it feels like I’m prying them apart. They feel swollen and achy. I feel like the Tin Man because they feel frozen in place, which is scary but also requires that I get out of bed slowly.”
“My whole body feels like a giant bruise. I mean no offense, but please don’t touch me. Even gentle touch can be painful for me.”
“The joints in my feet feel like they are on fire. It hurts to walk.”